So I get people, providers, frinds, family often who will ask "how are you feeling' or "how are you doing" and the honest answer would probably be it depends on the time of the day because right now it really does depend very much on the time of day for how I am feeling. But in all reality in the broader scheme of this how do you answer this question? Sure you could be honest and be negative or you could just answer your fine and let it be that. I am beginning to think that a good answer is for family, for providers, for anyone who knows me atleast some and who really wants atleast somewhat of a gauge that my answer should be: I am still good bc take away the physical stuff I am good actually bc there's plenty to be happy about regardless of health! Because I am still surrounded by the best little angels (okay maybe not angels but devilishly naughty and funny forgot to grab their halo's in disguish angels!) who make me laugh and crack me up and keep me on my toes and even make me frustrated sometimes so I know ive got plenty of reasons there alone to be happy! Nothing ever beats the smiles, hugs, phone calls and "I love you auntie erica's"!!! Definitely there are those moments when MPS and it's associated problems such as these headache kick my rear and I am tired and would like to exchange my body for a new upgraded less rusty model but I dont think i'd ever actually want to switch my life frustrations and all, bumps, bruises, occassional tears and all around ups and downs included because im not sure I would be who I am good or bad without all these experiences.
I got a call today from my Neurosurgeons office scheduler regarding doing a CT scan an having this done as soon as possible as Dr.Bragg is concerned from what her nurse told me that she may have to work with a General Surgeon although im not sure what exactly Dr.Bragg is concerned about. I know when I saw her last week she mentioned that one of the possible reasons for the shunt malfunction could be that the shunt peritoneal tubing could be against the intestine. While talking to her nurse I was working out some details regarding this CT and questions so never did ask for the actual details - it's actually amazing and a little embarassing to admit how often I forget the logical questions like what is the actual reason for someone else being involved! If the CT turns out to be fine then Dr.Bragg will proceed on her own but if she finds whatever she is looking for we may have to push back the surgery in order for her to be able to schedule the surgery along with the one specific General Sugeon she wants. If there is anything I could ask it is that my readers please pray whatever the outcome of this CT that the surgery still happen at the latest on the 9th because these headaches have been aweful and come on like nothing I can compare to - with the previous shunt issues the problems would be gradual and while very bad where atleast intermittent but these occur all throughout the day and I have very little periods of time without the headaches. Thankfully this weekend turned out to still be pretty nice - alot of time in the pool and very enjoyable with neices and nephews and family I just was very tired and the periods that the headaches where the worst where definitely the worst with feelnig down right exhausted. Like I said above I still have a good life and I am lucky enough to have a neurosurgeon now who wants to help and her team who are very good are very nice to work with - her nurse is second to none as far as helpful! Right now alot of other MPS health issues sit on the back burner including the hip issues for which I talked to the MPS-Ortho at Mn over the weekend (email) and he was extremely nice and understanding. Thankfully most of this is stuff that while uncomfortable can be pushed aside for now and can wait. The CT scan is set for tomorrow at 3:00 after I finally convinced the radiology folks tha no my primary insurance does not in fact require a prior authorization for a CT scan (would have required a 5 day wait) and that yes, I did have my primary insurances policy certificate sitting right in front of me on my computer! Thank to my insur. Case Manager for having sent the new benefit year policy certificate just a couple weeks ago! This CT scan requires no food or drink 4-6 hours before hand (ooh joy!) which is always interesting with the blood sugar spikes and lows and subsequent extreme ftigue but I will manage and have a snack along for right after,
I saw my P-MD this morning and she was able to help me sort out the urology - bladder issues and immediately called my neurogenic bladder specialist who I will see in august and talked to him about starting a medication to manage the bladder urinary retention atlest up till 24 hrs or so before the testing. She told me if she didnt hear anything back while she wasnt totally positive what was best to try she would start something but by this afternoon the nurse from urology called and said my dr there had agreed and they called in a med for 3x's a day (an anti-cholinergic) called oxybutynin which works by essentially drying up fluid in the body. Given I already take lasix I did email my Cardiologist to double check this was ok and will start once he gives the ok. A secondary effects of this med (which is what Dr.Bragg initially told me urology told her they would reccomend starting back in may if my post-back/shunt surgery nerve injury problems hadnt resolved by 2 weeks out. ) is that it causes dry mouth (bad for teeth then) and decreased sweating of which I have really abnormal sweating patterns already. P-MD said if side effects where to bad to stop and let her know.
I will update again when there is something more to update on - in the process of working out which day my older neice will come and stay this coming weekend - i'll pick her up either fri or sat. though fri is a little tricky since I also have to go to milw for pre-op and Lis is in Port Washington area about an hour from me and an hour from milw. I think other than our family day at bay beach will be low key week with her here, swimming, games and outside with nephews due to the headaches and movies at night. She doesnt mind going to my weekly infusions and next week is the nurse who usually brings different games so will be fun to.
Take care,
Erica
No comments:
Post a Comment